The ACT Chief Minister’s new ministerial arrangements came into effect while I was away from Canberra on mental health Ministerial business. The changes include removing my responsibility for the disability portfolio. Therefore, I would like to take this opportunity to make the following reflections about my time as the ACT Minister for Disability.
It has been a privilege to be the ACT Minister for Disability over the past 3 years. I have learned so much from people with disability, their families, carers and supporters, and the disability services sector. The generosity of the disability community in sharing their experiences and knowledge with me, and placing so much of their trust in me, has made me a better person and Minister.
A lot has happened in the last three years, a lot more will happen in the next three years, and indeed the next three decades. However, there are three things that should never change:
- People with disability must be at the centre of all that we do.
- ‘Nothing about us without us’ – decisions about people with disability must be made with people with disability.
- A strengths-based approach – people with disability have diverse experience, knowledge and expertise, and we all benefit from a more inclusive society.
These are the three key principles that I have taken to my work during my time as Disability Minister, including defending the NDIS from attacks under successive Federal governments and ministers.
On 18 October 2022, the Minister for the NDIS, Bill Shorten, announced an Independent Review of the NDIS. All disability ministers, myself included, agreed on the need for this review to get the NDIS back on track. We were of the view that this comprehensive review would inform the future direction of the NDIS. Suddenly on 28 April 2023, ³Ô¹ÏÍøÕ¾ Cabinet made a decision to introduce an 8 per cent cap on growth in the NDIS, without any discussion of the modelling for how this target would actually be achieved, and while the Review was still considering submissions.
I shared my strong concerns then, directly to the NDIS Minister and fellow disability ministers, that no major changes to the NDIS should be made until the NDIS Review was complete, that any changes should be made collectively by disability ministers as partners in the NDIS, that decisions should be made alongside people with disability, and that decisions should be based on the needs of people with disability.
In the most recent Disability Reform Ministerial Council (DRMC) meeting (held on 3 November 2023), I reiterated my concerns that the approach taken to the NDIS was getting off track – that the discussions were based on cost rather than supporting people with disability to live a good life. The public and political discourse during this time, and still today, is that the NDIS costs more than our society deems worthwhile.
People with disability must be at the centre of all we do, and their lives must be valued. Using costs as the starting point and end goal for these conversations is problematic. Disabled people are part of our community, and the NDIS is an investment in who we are as a community. I’ve heard the Prime Minister say for some time now “we need to make sure that we have an economy that works for people, not the other way around”. I don’t hear governments talk about Defence spending needing to be more sustainable. We can apparently afford a quarter of a trillion dollars being spent on stage 3 tax cuts for the most well off in this country. Is this where our priorities lie?
The lives of the people we love are worth investing in. I want to live in a society, not an economy. People are more than economic assets for workforce productivity. They are creative, clever, and beautiful in all their diversity.
At the November DRMC meeting, disability ministers were provided with the Final Report of the NDIS Review. I was hoping to discuss our views on the recommendations, as is the standard process for any other review and report. Instead, we were asked to agree to the express route to ³Ô¹ÏÍøÕ¾ Cabinet. This tells you everything you need to know about the basis on which decisions are being made – not about people with disability, but about ‘costs’ to governments.
On 6 December, ³Ô¹ÏÍøÕ¾ Cabinet agreed to implement changes to the NDIS, to establish a broader ecosystem of supports outside of the NDIS including foundational supports, and to adjust State and Territory NDIS contribution rates from 4 to 8 per cent. I support these decisions, as it is important that our systems are improved and more inclusive. However, it is critical that people are not blocked from accessing the NDIS without having other supports in place. The ecosystem needs to be designed with equity at its core, so that people have the supports they need and disability services aren’t returned to the pre-NDIS postcode lottery.
The broad reform direction, and governments’ response to the NDIS Review, must be made in partnership with people with disability. It’s unacceptable for Bill Shorten to say, as he did in his recent ³Ô¹ÏÍøÕ¾ Press Club address, that people with disability were engaged as part of the Review, therefore we can do whatever we want.
There’s also been commentary that ‘the NDIS is the only boat in the ocean’ and is treated as a ‘magic pudding.’ Of course all governments can do more to support people with disability, and should work to end segregation and provide inclusive services. For all my concerns about the process that led to the 6 December ³Ô¹ÏÍøÕ¾ Cabinet decision, I support the decision – it just wasn’t made for the right reasons. There’s a mountain of policy details to be worked through, including ensuring people aren’t blocked from accessing the NDIS without having supports in place.
In the three years that I’ve been the ACT Disability Minister, I’ve been working with the disability community to develop an ambitious and transformative ACT Disability Strategy to create a more inclusive society. The consultation process was designed by people with disability, and consultations were led by people with disability. More than 1,000 people generously shared their time, experiences, and ideas for change. The consultation on the Strategy has been heralded as the gold standard for consultation in the ACT, and nationally. The ACT’s Office for Disability, and Disability Reference Group, have raised the bar for every other consultation by ACT Government, and it has been an honour to see them in action on this work. In addition to the ACT Disability Strategy, we’ve also got an ACT Disability Health Strategy, an ACT Disability Justice Strategy, and an ACT Inclusive Education Strategy.
I, and the ACT disability community, look forward to seeing the ACT Disability Strategy released. The Strategy we drafted is ambitious yet practical. It aims to address the issues the disability community shared with us during the consultations. It’s critical that we address capacity building across our entire community, whilst also responding to critical issues like housing, transport and accessibility. The Strategy needs to take a human rights approach to disability, a social model of disability, a strengths-based approach, a person centred approach, an intersectional approach, focus on universal design, promote disability pride, make disability everyone’s individual and collective responsibility, and focus on systemic, cultural and attitudinal change.
The findings and recommendations of the Final Report of the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability reaffirm the evidence base and experiences of people with disability about the principles I’ve outlined above. In conversations with the Federal Government, and with State and Territory disability ministers, we have all agreed that we need to take respectful time to develop our response to the Disability Royal Commission, and that we would do so with the disability community. It’s too important to not get right. This is not our story as politicians, it is your experience as a community, and I continue to see it as my responsibility to ensure the government does justice to your needs.
I note that some of the Disability Royal Commission’s recommendations were not so straight forward – particularly in relation to inclusive education, employment and housing. I note that two out of the six commissioners with disability, Rhonda Galbally and Alastair McEwin, were of the view that segregation in these settings needed to end. I also note that in Rhonda Galbally’s speech in the Royal Commission’s Closing Ceremony, she said she learned that schools are rejecting people with disability and pushing them into special schools, often due to fears that students with disability could be detrimental to the education of students without disability, by using up too many school resources. Students without disability benefit by learning alongside people with disability, and embracing diversity. Commissioner Galbally said that attitudes change when people with disability are visible and meaningfully interacting in every community setting, starting with the earliest years.
Commissioner Alastair McEwin, also a commissioner with a disability, said that a recurring theme was the failure of the mainstream education system to include disabled children in their schools due to structural and attitudinal barriers, leading to disabled students being pushed out of mainstream settings into segregated settings, or told to go to specialist schools. In his closing remarks, Commissioner McEwin said that he has a vision of Australia having a fully inclusive education system, where there is only one education system – a mainstream system that welcomes and is inclusive of all students – and that until this happens, we will never achieve a fully inclusive society that embraces disability as part of the diversity of our community. For this to be achieved, we need to fund public schools properly.
During the Royal Commission, Gerard Quinn talked about reframing disability, by moving away from the medical model of disability towards the social model; from a deficit-based approach to a strengths-based approach; and a person-centred approach by looking primarily at a person’s humanity and their right to belong and connect and self-actualise as a human being.
Nicole Lee said that she was viewed by the things she can’t do, rather than her strengths, and that she was viewed for her deficits when living with a violent partner, not how she managed to actively live in a volatile environment.
Maria Sharnke said that disability is not something that should need to be accommodated for, and that disability should be accepted as part of the natural spectrum of human diversity, and that there should be no need to go above and beyond to ensure children with disability to have access to an education, because there should not be a system that perpetuates systematic inequities, inequalities and discrimination.
Chloe Hayden said, “I am so proud of being disabled and I am so proud of who I am as a person,” and that disability pride, and pride in who you are, is so important.
I pay tribute to all those who have advocated for so long, to make this Royal Commission possible, and all those who participated, for their courage and generosity. I also acknowledge people who did not have the opportunity to contribute, due to the system and governments that failed them.
I make the same points in closing that I did at the start:
- We must place people with disability at the centre of all that we do – what’s most important is the person, not your balance sheet. Inclusion of people with disability is an investment not just in the economy, it is an investment in humanity.
- Decisions that impact people with disability must be made with people with disability – ‘nothing about us without us’.
- People with disability have diverse experience, knowledge and expertise that benefit our community.
I make these points because it’s clearer to me now than ever before that we still have so far to go. It’s a long time since I turned 16 and decided that I didn’t want a disability payment attached to my identity anymore. It’s a long time since I was put in a literal box on the basis of a medical diagnosis. It’s a long time since I had to sit in the corridor outside my classroom and do my work alone, or be told that someone with a body like mine has less potential to make a positive impact on the world. But these things are still happening to people today, and it’s not OK. I’m here to tell you that you are not a diagnosis. Your identity is based on your creativity, your relentless endurance, your talent – not the fact that your body or mind are not vanilla and middle-of-the-road. Your body, and your mind, are worthy of love.
If you’re a government minister, a parliamentarian, a public servant, a journalist, a CEO, a business owner, a colleague, a teacher, a healthcare worker, someone who passes by a person with disability on the street – you all have an individual and collective responsibility in contributing to a more inclusive society, whether your identity is as a disabled person or not.
I know that my Greens Senator colleague and friend, Jordan Steele-John, will continue to fight the good fight, and I thank him for his invaluable support and advice. I will continue to champion his work, and be right beside him.
My final words are for people with disability, their families, carers, supporters and advocates – thank you. Thank you for all that you have done and that you continue to do. Thank you for your generosity, your bravery, and your trust. I am sorry that you need to continue to fight this battle. I may no longer be the ACT Minister for Disability. I will always be an advocate and an ally. I will continue to listen to you, and to amplify your voices.
They win by making you think you’re alone. What they didn’t count on is that we have each other.
